calf and hamstring muscles severe pain when standing or trying to walk
watch that your BP doesn't go too low if it does take hydrocortisone see Endocrinology amyloidosis specialist. Do your ankles swell feet etc do your retain fluid ? Do you take Lasix water pill. Whaya… read more
I am suffering from primary Amyloidisis affected on kideny filtration so creatine increased to @8
Sean I’m sorry you’re not getting what you need from this site. I might have to agree to disagree on some of your points. I wish you the best on this journey we’re all on.
I have read that people with AL amyloidosis who have neutropenia may need to avoid foods that are more likely to cause infection. Soft cheese, blue cheese, mayonnaise, raw eggs, and yogurt are foods that can contain higher levels of bacteria. So, should drinks like kombucha be avoided as well ? Could that be a cause of rectal bleeding w/ bowel movements ?
Ask your specialist. Don’t follow online advice from lay people.
My husband who was diagnosed about a year ago, but who has had symptoms of CATTR for +12years has severe balance issues. Originally they were blamed on vestibular neuritis, but seem to worsen ever more frequently with "bouts" of imbalance and falls. Sometimes there is LOC, other times he is just soooo tired that he falls down. Drs seem to just shake their heads and seem to imply it is a separate issue
Has anyone else ever had inner ear nerve damage attributed to the amyloidosis?
I had a stroke in Cerebellum that I thought was cause of balance issues ( don’t know when), but I think it may be related. Had gotten worse lately. I have CM ATTR so it may have triggered the stroke.
Hi Rob, Thx for your response. I have Congestive Heart failure (Diastolic muscles) complicated by Amyloidosis which results in Edema. I wear compression stockings daily and take Bumetanide ( water… read more
I take Jardiance and Vyndamax. My cardiologist says it might help ejection fraction.
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I have be taking Tafamidis since March 2022 with no positive changes. I was thinking that due to my advanced heart failure I may not see any benefit by continuing to take Tafamidis.
You should stay on meds. It helped my brother a lot. He got a heart transplant las November after thanksgiving and he is doing so good now. I hope I get a prescription soon.
Thank you Gents.. appreciate the info on diets! Hopefully will get some back.. I love liver!!